Team James -

I've gone from 0 updates in 2 months to multiple this week. James is doing OK - he started his new medication today which is essentially a chemo-like drug. I think the severity of the drug "got real" when I realized I had to wear latex gloves to handle it... brought me back to reality of what we are putting him James' body. It arrived via FedEx and we gave him the first dose this morning.... will likely know more on how he is handling it over the next week (it's a fairly serious medication so we're hopeful but nervous). We are optimistic that this will help him get better and keep moving forward so looking for the silver lining here!

However, that's not the purpose of my update today; I unfortunately have some not very good news to share. There is another concern that has been weighing on me the past week that I haven't been able to share until today. One of my best friends, Chris Danly, was just diagnosed with pancreatic cancer this past week. Chris is a lifelong friend and literally like a brother to me. We played little league baseball together, football in high school, roommates during college, stood in each others weddings and have been lifelong best friends. His family is like my family and vice versa. Chris and his wife Crissy have been incredibly strong since getting the news, as have their two kids Paxton and Palmer.

Chris goes in for surgery next Wednesday to have his gall bladder, spleen and part of his pancreas removed. He will spend the next 5-7 days in the hospital and then 4-6 weeks bedrest while he recovers. We're hoping for more answers in the week following surgery but those are the details we have at this time.

How can you help?

1 - Make a donation by clicking HERE.

They have a battle ahead and a family to care for. Anything you are able to donate would not only help eliminate the financial stress and focus on what's ahead, but also show them how many people have their back (and even those they don't know/have never met)

2 - Keep Chris and his family in your thoughts and prayers.

This isn't a short journey, nor one I would wish upon anyone, let alone a best friend. Feeling for you Chris - stay positive and strong. If anyone can beat this it's you.

​Showing support early is critical so please do what you can if you're able to help

Thanks all,

Dan, James, Rita and the McCarthy Family

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Team James –

This is BY FAR the longest stretch (almost 2 months) that I have gone without writing an update. I recently realized that many have been in the dark on James’ status so my apologies for the extreme delay on getting this out to the group. We’ve had some ups and downs and every time I was ready to write an update there seemed to be details we were waiting on that caused me to delay… and so goes the cycle over and over again.

We’ll start with the good:
Back in January we were able to take James to Blue Harbor Resort in Wisconsin as part of his wish from Cal’s Angel’s. It was truly amazing as James got to spend the weekend with his cousins, aunts, uncles, and grandma’s and live it up for a few days. James is still a little guy because of the medications he is on… about the size of a typical 18-24 month old so he was banned from most of the waterslides but he took it in stride. We were able to sneak him on one or two he wasn’t supposed to be on and break a few rules… gotta start the "rule bending” early in life! PS in the video below James is saying "Thank you Cal's Angel's"

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James was also lucky enough to go to Disney On Ice with his Uncle Ryan and cousin Frank... I think his face hurt from how much he was smiling for 2 straight hours.  They literally hit every one of his favorite characters one after another... Mary Poppins, Mickey Mouse, Lion King, Frozen, Moana, Toy Story... they hit a home run.  This kid is pretty lucky to be living the high life recently with all these great life experiences and we can't thank Uncle Ryan and Tia Ruth enough for taking him.

We thought we were in the clear a few days later but he came down with the flu (I think from me, which made it that much worse) and was running a 102+ temp... so back to the ER. Surprisingly they let us bring James home and monitor him. It took him about 2 weeks to beat the flu but unfortunately that's not where the story ends. As many of you know James has been battling chronic GVHD - originally in his lungs and most recently with his skin. With James' body going into action to fend off the flu his immune system activated, flaring up his GVHD.... GVHD is essentially his immune system attacking his body. The result has been an increased severity of his symptoms that we are having a difficult time getting under control.  As a result James developed a pretty severe rash over his entire body and we have been back at Lurie's every week for the past few weeks.  We more than tripled his steroid dose this past Friday and also increased his tacro (another immunosuppressant). Over the weekend we noticed that James is starting to lose his hair as well; it is thinning out and when you brush his head with your hand or a comb you see it in your palm.  James was back at Lurie's Monday and they are concerned about the escalation of his GVHD and that he isn't seeing much improvement with the med changes (yet).  The doctors also explained that his hair loss is the GVHD attacking his hair follicles, which could potentially be permanent if it gets severe enough. Sigh.

Our plan right now is to add a new drug called Ibrutinib. We're waiting on insurance approvals since it is typically used in adults and not children (and costs a lot of $$ which I am sure delays approvals further) but we may be able to start him on it this week if all goes according to plan.  We're less than thrilled to be adding a 3rd immunosuppressant on top of his current meds... I put a photo of his current daily meds below so you can see what he has to deal with. He takes all of this on his own one after another - pretty amazing for a 3 year old. This new med has some pretty scary side effects (increased chance of cancer, tumors, kidney and liver issues, etc)... one even says it could lead to "a very bad brain problem".... it goes on to explain what that means but that's an interesting way to start a sentence. All that said, James has been on a million drugs with major side effect possibilities so it we aren't reading too much into it, but the more of these you stack up in his body for year(s) the more stressful it gets. We're really hoping this works and quickly as the alternative/next step would be to put a permanent PICC line (IV) in James' arm for another medication that would require us to be at Lurie's two days a week for infusions. The PICC line comes with a whole host of other quality of life issues, especially for a 3 year old, so we aren't even thinking about going there mentally right now.

On a positive note James' skin looks a little better today and I don't think it's optimistic thinking on my end so hoping that continues overnight. He has not been able to sleep because of the itching so looking for a good nights rest tonight. He's happier than even despite all this so that's a blessing in disguise... resilient little guy. Was hoping 15 months after transplant we'd be past talk of more meds and IVs but it's never a straight path despite how much you want it to be.

Keep James in your thoughts but all in all we're doing pretty well... just need a good week and we'll be moving back in the right direction. I also promise not to take a 2 month hiatus from updates again!

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